I started my blogging week by listing some of my frustrations with our ongoing struggles with services and determination to do more to help other families facing similar difficulties. So I’m glad I’m finishing the week with some good news (conveniently forgetting that Boo has broken his glasses, the boiler’s packed up and, worst of all, our washing machine is now broken). There’s always good news. And today the sun is shining, my Mum and sister are staying for the weekend and it’s easier to see it.
So, we have two bits of big news this week.
First, after all our trials trying to access OT services to get appropriate postural seating for Boo. Don’t worry, I won’t rehearse the whole sorry saga again but you can read about it here. The good news is that we have seen an OT (health) twice this week. She was lovely. She confirmed the urgency of Boo’s case (ya-huh, she says sarcastically) and advised he needs a Jenx Bee for home and nursery. Strictly speaking OT (Social Services) need to sort out one for home but we haven’t yet seen them either (although a complaint to them means it will likely be soon) so the OT (health) has said she will order it and sort out the details later. I can’t tell you how much it means to us that Boo will have appropriate seating. That he will be able to do some more independent play. This had been such a long road for us, and to be honest, I’m still not going to believe it until I actually are the seats, but I can see the light at the end of that proverbial tunnel now.
Second we started conductive education this week. I went into it open minded and came out feeling very positive about the whole thing. I’ll blog separately soon about what conductive education is and what it’s doing for Boo and us as a family but for now let’s say I’m cautiously optimistic it’ll be good for Boo. And for me, it was great. The teachers were amazingly supportive and lovely and being in a place where all the kids have CP or neurological disorders was so liberating. Oh and Boo highly approved of the chef and the amazing lunch he made him (homemade veggie sausages, mash, broccoli and gravy). The only thing that made Boo cry in 3 hours in which he was worked so hard and in unfamiliar ways was when he finished his pudding: a massive portion of homemade strawberry cheesecake. So they gave him seconds! As for me, well I felt like I spent 180 minutes rubbing my tummy and patting my head (so much to remember and much of it interestingly different from things I have been taught by a Bobath trained physio). I hope I learn as fast as Boo! And also that there’s cheesecake for Mums sometimes too.
But it’s not all about Boo. Poor Sissyboo has been a bit neglected on the blog lately. But lots has been going on in her world. She started a new after school club in drama, dance and singing. Don’t think I’m a stage mother or anything of the kind. I need an extra hour at work on a Monday and Sissyboo loves role play, theatre and film. She also needs to build her her confidence, shaky at the best of times outside the home but much more fragile since Boo’s arrival. She seems to really like it! And she’s started violin lessons at school. I used to play (not for 20 years, since I badly hurt my wrist in a woodwork accident at school) and she has always been fascinated by my old violin in the loft. I went to hire one with her last week from a fabulous local music shop and she spends a few minutes each day proudly showing it to people and polishing it. Her first lesson went well so we’ll see how that goes.
Anyway, more from us soon, including, I hope lots more good news. I hope you have some too. Would love to hear it as always!